Being in a maze is chaotic. There is sense of confusion in your surroundings, an urgent need to find your way, frustration at the pure craziness of it, and there never seems to be anyone else in the maze with you.
This is how having keratoconus (KC) feels to me.
I know that a picture says a thousand words—and there are many computer-generated photos of keratoconic vision around the web—but does that really describe the reality of having keratoconus in its entirety? I don’t believe it does. Most people who don’t have keratoconus can understand what they see in a simulated photo full of ghosting or streaky, sparkly lights, but they can’t grasp a never-ending life of the distorted vision portrayed in a still photograph.
A keratoconic, blogger friend and I have been discussing all the oddities that go along with our vision lately. We have different stages of KC and my vision has improved in many ways as a result of cross-linking (CXL), but I still have keratoconic vision even if my visual acuity is much better than hers. We realized that keratoconus has never taken away our ability to see color, for example, although I have problems seeing clear objects and knock over water bottles at least twice daily. Why are they always full when that happens?
We also compared notes on what visual acuity (VA) really means when you have keratoconus. We decided it’s not the same as someone with simple myopia. For me, the lowest lines I can read are so faded and full of ghosting, or multiple images, that I get the lowest line I can see based primarily on knowing which letters my ophthalmologist doesn’t use. It also takes me about a minute to read that last line and I read the letters in no particular order. Starting in the middle and working my way out seems to work best for me. Go figure!
Then there is the big, scary world, which involves so many things the non-KC group takes for granted. Let’s begin with attempting to drive a car. This is akin to trying to navigate your way through a maze, but with massive anxiety. My doctor’s assistant told me yet again that I can read 20/40 with each eye—very questionable, so I’m technically legal to drive my car. With keratoconus, vision dramatically gets worse as the day goes on so most have trouble driving at night—the 1st symptom I noticed, but CXL stabilized my vision and I no longer have this problem.
My biggest issue with driving is due to post-CXL light sensitivity. If I am forced to drive during the day, it will only be to the eye doctor since the clinic is less than a mile away. I see multiple images of everything: other cars, pedestrians, buildings, signs, stray dogs, big trucks and buses, panhandlers, broken palm fronds, and whatever else is within my sight.
Due to this, I drive when it’s pitch black, but only once a week or so. There is literally less to see at night, so ghosting is less of an issue. I can stay in my lane, but I do feel I’m very focused when I drive, as if I were contemplating some abstract concept involving something I don’t understand, like physics. Good thing for the tinted windows to hide the bizarre expression on my face.
The bulk of my night vision is more like the mild stage of keratoconus. I can’t read street signs anymore, have trouble seeing where to turn to get into a parking lot, and the streetlights and headlights of oncoming cars are bothersome and have halos. They used to look like fireworks, so I try not to complain. It is absolute madness, but I feel I can safely drive at night now as I averted getting sideswiped by a possible drunk driver a few weeks ago. The Department of Motor Vehicles may dispute that, but I’m sticking by my story—and my 20/40 VA.
The most frustrating activity involves a store. I refer to this as being utterly lost in the maze and going down every dead end in attempt to find the exit. This would usually be the big-box stores that are so common in the US, especially in the wide-open SW, but even smaller stores pose a problem. The trick is to always go to the same store and memorize every aisle and exactly where every item you need is before losing any vision, but that isn’t always practical or convenient, especially when they decide to move things around in the store for no reason.
I will put this in perspective. I had to go to a beauty supply—a smaller store by US standards—for more products to put in my increasingly unruly hair due to the post-CXL steroid drops. I knew where the hair products were and I could easily identify what I needed by the shape and color of the container, since I can’t read the small print on most items. Maybe the price had doubled? Well, that’s part of the fun, of course. I also needed eyeliner. Why would I need that when I can’t see well enough to apply it with any precision? I really don’t know, but I could see just fine less than 2 years ago and know I look a hell of a lot better with makeup. I might look like a clown now, but no one has stopped me and told me so.
In search of the aforementioned eyeliner, I missed the aisle and ended up in the lipstick section, which I could tell was lipstick from the shape of the tubes. I headed to the next aisle and saw all the rows of colorful sticks. Eyeliner! Luckily, the brands are written on big signs and since I can see color, I grabbed my golden olive and headed to the cashier. 6 months post-CXL, I can now read the debit machines for some reason and can see money, but that was impossible before. I was about to start using singles to pay for everything like Ray Charles did to avoid getting scammed.
Another bizarre place is the center of the maze: sitting in a doctor’s waiting room. I’m not having to navigate or search for anything—I just have to sit forever and do nothing. I can’t read a magazine, after all. Unless someone is quite close to me, I can’t see their face and it’s an odd feeling. I don’t mean this in any offensive way, but everyone looks like the pre-surgery photos of the man who was the 1st face transplant patient. Just skin over a skull, except I can see the hair and skin color. Just Google it.
It’s in these waiting rooms—my home away from motel room—that the anxiety from driving dissipates, the frustration of trying to see through the distorted stores goes away, and I’m left all alone in a bubble of utter isolation. I feel that no one can see me, since I can’t see them. It’s as if I’m in my own world at these times—the crazy, maddening world of keratoconus that got dealt to me in that crappy game of poker.